Week 41 of 43 and Next Steps
I’m thankful to be updating you today. We are finishing our 41st week out of 43 in Davis’ first chemotherapy treatment plan. I’m ready to watch these 43 weeks fade away into my past. The part of our story that is “back there” with “remember when’s?” and “can you believe we lived through that’s?”.
Davis has endured so much suffering this year. His little body is so tired and worn down. He is so skinny, pail, and easily fatigued. He’s my little fighter and he doesn’t go down easy, even still. The moment he connects we are going to the hospital he fights every step. He tells the doctors his expectation of gentleness from them every time they examine him. He is a fierce advocator for his own well being and treatment. I am in awe watching his strength. I recently was explaining this to a dear friend in tears, and she offered me an anointed prophecy, that she could see his powerful spirit advocating for himself, and that she can’t wait for when he gets older and becomes an advocator and fierce protector of others. Cue the waterworks….this mom is done for.
Davis is increasingly sick with each awful chemo. The Lord has spared us so far without fevers and Emergency Department runs since his final big chemo, and yet Davis was more actively ill than he has been to date. Chemotherapy is evil and destroys my baby internally. It better be doing it’s job of destroying those evil cancer cells as well. I’ve never felt so helpless in my life than caring for Davis through this past year. Lance and I often look at each other in tears after having gotten Davis to sleep, and just sit in sadness that we can’t rescue him from any of this. This helplessness feels like a thousand pounds sitting on our chests.
We have had so many transitions happening all at once. Lily started 3rd grade. She loves her teacher and was so thankful to have a routine again, besides endless hot days and going back and forth from the hospital all summer long. I’ve transitioned into a little bit more therapy work, and back into my role as Director of Heritage Women. Taking on more ministry alongside this life is an attempt for me to adjust to what is our new normal. Lance has stepped back into building all sorts of things preparing for a local vintage market that he and some friends sell their goods at, here in Phoenix, called Junk In The Trunk. This means Lance is spending hours in the garage preparing for this event. Davis’ immune system is supposed to stay suppressed but not totally plummet to nothing while he’s on his upcoming maintenance protocol so, we have been starting to consider and embrace a new normal outside of total isolation. We were required to stay away for so long, that we are almost having to re-learn how to integrate back into society.
One of our biggest upcoming transitions is Davis going back to school. The doctors are encouraging us that it is common for kids in maintenance chemo protocols to return to school. He will be back in the classroom with his port still in, and immunity suppressed. He will also be adjusting back to life with expectations of what he is doing and when, having to follow instructions, and make good choices. Pray for his teacher! Ha! We have been meeting with the school and his therapist regarding transition plans, in how to help set him up for success in re-integrating into school culture and friendships. One of my biggest mournings in this is we are encouraged to have a “Meet Davis” time where Lance will take Davis into the classroom, read a book about cancer or what it means to be different, and have a Q&A with his classmates of what it means to have cancer, be in the hospital, be sick, etc. Even typing this I have tears; my baby is different from others. He’s one in a million, unique, and for many this is a gift to have a part of your story stand out of the crowd. My prayer is it is a gift for Davis long term, but the process I know will be vulnerable and difficult at times. The intention is to create a time for Davis to share his story but it’s also a time of reassurance to his peers that different doesn’t mean scary. Reassuring these kids of whatever myths they have of cancer. You can’t catch cancer (I remember that being one of Lily’s first questions when Davis was diagnosed. Cancer is so scary in kids eyes). You can still play with Davis even though he’s sick, etc. It’s so easy for the worst case scenario to pop up in my head, picturing kids feeling scared or uncomfortable with his differences. Will they love him? Will he know how to even be loved by his friends because he’s been isolated for so long? Even sitting in the worst outcome, I have beautiful pictures in my mind of the kids who have been with him during this, loving him fully. Hudson telling me at Davis’ birthday party how awesome and smooth Davis’ head is with no hair. Brett and Davis fighting over toys because nothing has changed. His cousin Fischer who was willing to re-learn how to play with Davis so they don’t harm his port or put him at risk. God is still writing Davis’ story. My heart as Davis’ mom watching him step into school, which comes with risk, uncertainty, and exposure, brings me to my knees. I’m so thankful Davis has as much courage as he does; that God equipped him for such a thing as this. I am committed to being with Davis and Lily with whatever comes up for them in this next transition. I’m thankful that I have a God who loves me enough to hold us through each step. Because I don’t have a clue what I’m doing, and have learned to find beauty and acceptance of my lack of control in this life.
Our next steps….
Scans on 9/9 at 11:30 AM
Results will be told to us on Tuesday 9/10. We are praying for clear scans so we can move onto Maintenance chemo.
Start date for Maintenance chemo is 9/18 where we will begin to give him oral chemo daily, and every week he will go into the hospital for one short infusion chemo.
They expect him to not have any significant side effects, but will be monitoring him and adjusting dosage to make it manageable for him.
